Submitted by SCAFoundation on Mon, 01/10/2011 - 11:16am

ANAHEIM HILLS, CA — The Stuewe house is filled with framed photographs of two beautiful girls. In one photo, Melanie, 6 months old, sits on the back of her sister Shauna, who's 4 and a half. The other images show just how much they grew to resemble each other in their teens, with long, blonde hair and wide smiles.

On Thursday, Melanie turns 15, which means she's the big sister now.

Melanie Stuewe holds a photo of her sister Shauna in their Anaheim Hills home. Shauna died of sudden cardiac arrest in 2006 during cheerleading practice. The room was Shauna's bedroom that has been turned into the office of the Shauna Ann Stuewe Foundation. Shauna came up with the phrase "God Is Way Nice!" in her high school bible study group.

In February 2006, Shauna died of sudden cardiac arrest during cheerleading practice at Esperanza High in Anaheim. She was a 14-year-old freshman. Doctors later discovered she had a rare genetic mutation that caused her heart to beat erratically during times of physical exertion. Her parents, Kirk and Lori Stuewe, started a foundation in her name.

On Thursday, they'll attend an annual conference in Costa Mesa, where educators and physicians will discuss ideas to prevent future deaths of young athletes. That'll give the Stuewes a chance to promote their cause, which is putting more portable defibrillators in O.C. schools.

After Shauna's death, Kirk and Lori became more protective of Melanie, who was then 11. Then, in the spring of 2009, Melanie fainted during a plane ride. She was diagnosed with CPVT (catecholaminergic polymorphic ventricular tachycardia), the same disorder that had killed Shauna. CPVT is an electrophysiological disorder that is estimated to cause 15% of unexplained sudden cardiac deaths in young people.

In the summer of that year, another fainting spell came: This time Melanie was aboard a horse, getting a lesson. She became dizzy and slumped.

"We freaked out," Kirk said. "We couldn't believe it was happening again."

You've heard the term "helicopter parenting?" Well, Kirk and Lori were in full hover mode now. Melanie had always loved cheerleading, as her sister did, but she had to give that up. She could no longer risk allowing her body's adrenaline level to rise. She couldn't even go on the rides at Knott's Berry Farm. The constant worry about Melanie has lessened since November, when a small pacemaker was implanted just below her left collarbone. If there's an arrhythmia in her heart, an electronic pulse will restore its rhythm. She can now go horseback riding again.

"I still can't do all the things I want to do, but I hope I can do more in the future," she said.

Her mother has learned that she, too, has CPVT, although she's shown no symptoms.

The Stuewes hold fund-raisers to buy as many of the $2,000 automatic external defibrillators as they can and give them to schools. But the cash crunch has made AEDs less of a priority in many schools. A death "has to happen at one of the schools for them to take it seriously," Lori said.

SOURCE: Orange County Register